Conversations with Ed, Waiting for Forgetfulness: Why Are We So Afraid of Alzheimer's Disease? is a book about Ed, who had been diagnosed with early Alzheimer's in 2008. I was inspired by the book, the conversation, and especially by the dignity that Ed both demonstrated and inspired from the audience and his co-presenters. As a result, I chose to volunteer at one of AgeSong’s elder communities in the Bay area, where I met other individuals diagnosed with Alzheimer's, who were also treated respectfully and provided with a variety of enrichment activities.

Origins of the Book

In the following interview with Bob Levitt, Ed’s long-time friend, I learned how Ed and Nader met and how Nader came to co-author the book with Ed and Patrick.
Bob recalled:
"I was really just a messenger, carrying an idea, a concept, that had been developed in concert with Ed and Elizabeth Bugental. It was Elizabeth who encouraged us to go to her friend Nader and develop a relationship of mutual benefit between Ed and AgeSong. I have known Ed for over 20 years. We met in the early '90s. I was a director on the board of the Bolinas Community Land Trust (BCLT) and completely ignorant in the realm of affordable housing projects. Ed was an affordable housing project manager, serving non-profits. BCLT’s board's hiring committee interviewed all the applicants for that job and selected Ed.

Dealing with HUD was (and still is) a rigorous, tedious process. Ed made the process both clear and somewhat fun. He had that good sense of humor and even disposition to manage a tricky and difficult business. Unlike other managers of such projects, who appear to be jovial, but can be manipulative, his humor isn't the manipulative kind that "covers up" or "distracts"....it illuminates."

Ed has a direct, honest approach. His good spirit is genuine. In the non-profit world, people like that are precious. Ed met Nader at AgeSong. Elizabeth Bugental came up with the AgeSong name. She created it from the depths of her experience and perception of aging, from her belief that even the most challenging elements of aging can be seen – and lived – as part of life's full song. I'm sure she says it better in her own words, in her book, AgeSong: Meditations for Our Later Years, one of the seminal connections.

Elizabeth was living with James Bugental, her husband, a legendary psychologist, teacher, and writer. Jim’s pioneering work in existential psychology influenced hundreds of young psychologists, including Nader Shabahangi. Elizabeth was running the drama department at a university in Washington, DC, related to art, psychology, and aging. Then Jim had a stroke, losing all sense that he was James Bugental.

At a presentation, Elizabeth told us that she had hoped that Jim was going to come along that evening, but he had a cold and wasn't feeling so well, so he stayed at home. And when she "talked about" Jim, she talked with an insightful, compassionate empathy that amazed and informed us all. Elizabeth described what it was like to be a partner of a man who had no recollection of his career or their life together. She said that though Jim’s short and long-term memory were gone, his essence was still there – open hearted, sensitive, and present. He did not remember tha the was married to Elizabeth, but his knew that she was very nice and adored him. Because what she put into the relationship was so pure, Jim responded with trust. She was able to impart the merits of being trustworthy with a husband who had no memory of their relationship.

At a party Elizabeth threw for Jim, everyone spoke about what Jim gave to them in their lives. When they finished, Jim said to Elizabeth, “Who? That’s me. I really did that!” When she spoke to us on that one night, she evoked the best kind of tears from many of us. Jim lived to be in his 80s. Elizabeth died about five or six years later. Before she died, I told her that I had a friend, Ed, who was recently diagnosed with Alzheimer's. She was running an AgeSong support group in Marin. She wanted to meet Ed. I introduced her to Ed at lunch in Petaluma. They got along immediately. Elizabeth told Ed to keep breaking new boundaries, to relax, and to get together with Nader. Ed adored her. Shortly thereafter, Ed met with Nader. In 2007, Nader brought Ed together with Patrick and they wrote the book collectively, each bringing his special perspective into the conversation.

Six Years Later

Ed lived independently for many years and has recently moved to AgeSong’s Hayes Valley community in San Francisco, where one can usually find him in the front lobby, watching the world go by and chatting with passersby. His friend Bob had fears about Ed moving to assisted living. Bob was afraid Ed was feeling frustrated about his lack of independence. “He finds life entertaining and stimulating at AgeSong,” Bob noted. He continued:
"Ed is at his best when he feels useful, even when it's simply through the elevating quality of his humor.Yesterday, as he struggled with his mind's fluctuating abilities, trying to express what was an important point, getting it started, but losing it, starting it again, losing it again, restarting, losing, restarting, losing.....I tried to help by doing a rehash of what he'd said, a bit of what had led into what he'd said, then his key words repeated, and then, as he stared at me with a puzzled look, I added the explanation, 'I just said all that as a rehash for you to consider, to get you re-directed back on track', to which Ed replied, 'Well consider me un-re-directed.' And, once again, our efforts in "keeping continuity" surrendered pleasantly to shared laughter. Ed's humor is a great and continuous, therapeutic gift, to us and himself."

“I like it here,” asserted Ed, “I talk with people who have hours worth of talk. My favorite thing to do is to support people and to make decisions to work our way out of medical problems. I’m working hard at doing little.” At a recent Elders Academy session, Ed said, “We do not spend enough time to figure out who we are and why we are here. When I want to go home, I ask myself, ‘Isn’t home where the heart is?’ ”

[Reprinted from We are AgeSong, May 2013 AgeSong Communities Newsletter posted on AgeSongToday
by Dr Sally Gelardin, Enrichment Director at AgeSong Elder & Assisted Living Communities]